Clues before a missed diagnosis

When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers (hence, brought on by their own risky habits). I don’t mind being an ambassador for an unexpected face of lung cancer: young, never-smokers. Nor do I feel that anyone deserves to have lung cancer, whether or not they smoked.

The second question is usually along the lines of “how did you know?” and “what were your symptoms?”. People are genuinely curious about (and afraid of) cancer, so if you are willing to talk about your own experience, they really do want to know. And why not. If you tell someone what to look for, they may someday avoid the tragedy of a delayed diagnosis.

I am certain that I would have been diagnosed earlier had I been a smoker. Even though I was developing symptoms that were suggestive of lung cancer, my status as a never-smoker meant I was in a low risk category. It would take somebody who could think outside the box to consider that possibility.

Unfortunately, a much greater tragedy had some bearing on my delayed diagnosis as well. In the late spring of 2000 I went to see Fred Rimmele, my doctor at that time, regarding progressive weakness in my left hand and arm. Fred was a relatively new MD and I appreciated his enthusiasm, his curiosity and his energy. I felt that he took my concerns quite seriously. He ordered a nerve conduction test and made an appointment for me with a neurologist as well. He also ordered a chest x-ray. His notes from that day read “I would like to do a chest x-ray to make sure that there are no chest lesions which would be very unusual in this young, non-smoking woman, causing brachial plexus problem.” The chest x-ray was clear–but Dr. Rimmele was aware of something that I had no inkling of. It is possible to have early symptoms from a paraneoplastic syndrome: an immune response on the part of the body to substances produced by the tumor. One manifestation can be muscle weakness.

No clinical reason was found for my symptoms although I continued to follow up with a neurologist.

In June of 2001, I went to Dr. Rimmele with another complaint–nodules on my fingertips. He sent me to a rhuematologist who also ordered a chest xray. Once again, I was unaware that digital clubbing was another possible indicator of lung cancer. This x-ray appeared clear as well.

I had not yet developed shortness of breath, but I believe that it would have been only a matter of time before Dr. Rimmele connected the dots.

And then the unimaginable happened. Fred Rimmele was a passenger on one of the planes that crashed into the Twin Towers on 9/11. It was unfathomable that he was gone: such a good guy and a fine doctor as well. I was devastated.

At this time I was referred to a new general practitioner at the same clinic. She was gentle, seemed caring, but was terribly complacent. And in the end–I think she was lacking in imagination. It is still hard not to imagine how much earlier my cancer could have been caught had she not waited so long to order a CT scan.

In April of 2003 I came to this doctor with a complaint of shortness of breath. There were also specks of blood in my sputum when I coughed (hemoptysis). She ordered a chest x-ray which reported that my lungs appeared to be clear. In the absence of another explanation, she diagnosed me with adult onset asthma. I neither wheezed nor had asthma attacks, but my PF’s (peak flows) were low. Even as I developed a chronic cough, hoarseness, and recurrent infections, no other cause was considered. For two full years I was (mis)treated for asthma.

By January of 2005 I had begun to feel fatigued and unwell in general. When I lay down at night, my lungs made an awful rasping noise. I began to have trouble swallowing. Finally, in March of 2005, I was coughing up a copious amount of blood. I saw the on call doctor in the clinic on Friday, March 18th. He felt I had a virus and sent me home. By the following Monday I was much worse and returned to the clinic to see my doctor. She ordered a chest x-ray which showed what appeared to be pneumonia in my left lung. After three weeks of antibiotics and two more x-rays–it was clear that something else was going on. The radiologist’s report read: “The lack of change over approximate 3 weeks raises concern for alternate diagnoses, such as atypical pneumonia, abscess, bronchoalveolar cell carcinoma, or a lung mass” A subsequent CT scan found a large consolidated area that it said was “suspicious for neoplasm”.

I was not familiar with the term neoplasm, but the grave look on my husband’s face indicated the severity of the situation. I was admitted to the local hospital where I was treated with intravenous antibiotics as we awaited a biopsy. I also began to educate myself about lung cancer: just in case.

As a medical student let me tell you thank you for writing about your experience of being diagnosed in such detail. You’ve helped me to avoid becoming like that 2nd general practitioner you saw, and more like Dr. Rimmele

Wow—your comment caught me unaware but I thank you for taking the time to do so. I knew your husband for but a brief time but he was brilliant and curious both and an uncommonly good doctor who thought outside the box. Thank you.

This reading was very interesting, for the past year and a half. I have been having shortness of breath, and hoarness and and dull pain in the middle of my chest the really hurts when I sneeze or cough and if I have any thing to cool it’s like having a brain freeze in my chest area. I have been diagnose with asthma about 4 years ago. Sometimes when I’m out of breath my chest burns really bad. Every chest x-ray and CT scan that I have had has come back clear. But I know that something is wrong. When this area really hurts it almost like a flare up that it hurts to breath, I can’t sleep because it hurts to lay down it hurts to walk. I have been to a gastrologist and his report was okay no acid reflux or gallbladder problems. So now I don’t know what else to do.

This is a hard one—you have had a CT scan which is considered the gold standard for diagnosis. However, I also know what it is like to really feel that something is wrong and yet not have an answer. Continue to listen to your body and to treat the asthma, and hopefully at some point the pieces will all fall together. Certainly if your symptoms worsen, as mine did, don’t hesitate to push harder for an answer. Best of luck.

I have had severe left rib pain and upper abdominal pain for almost 1 year. The pain is so bad it hurts to sleep at night. They have basically diagnosed me with chronic pain. A ct scan was just ordered as a precaution and found a 7mm nodule in my lung. I have NEVER been a smoker. I’m worried, but was told they would just watch it and that it could be anything, even a virus. Hard to believe that since it’s been 1 year, pain is terrible and there is a nodule…

Read your entry- these are the symptoms and experiences my mother had- down to the Gastro and walking, etc. She had been trying for 8 months to get into her Pulmonologist because her medicines and inhalers didn’t seem to be working- but they never had an available time and we had made an appointment 4 months in advance which got canceled because of a medical conference the doc had decided on ( we were told “last minute schedule change”).

Thank GOD she had worsening of symptoms which led her to call 911 and go to the ER. They found she had an “atypical pneumonia” and started an infectious disease work-up and did a CT scan that same day. This is when they found a 2.7 cm mass in her right lung. She had had a 3-view x-ray 9 months prior for pre-colonoscopy clearance for the abdominal/back pain she was having- it did not show any mass, nor were there any questionable findings.

If she had not developed pneumonia she would not have seen the dr until the last week of October. She just finished her chemo treatment and we have a PET scan next week.

Moral of the story: be persistent. Be obnoxious. Be rude. Be whatever you have to be to get the care you need. Be your own advocate and find an NP or dr who believes in you.

Hi Ruth,
I just read this post today and I’m curious if the doctors have figured out what you have. I’m also experiencing similar symptoms to yours, and also have clear chest x-ray and CT.
I would appreciate any feedback you may be able to provide.
Thank you.
Sara

Did you have a treacherous cough? Or a very very subtle cough? I too have had the weakness/tingling/numbess in my left arm. I have shortness of breath and a very slight cough however I was given a prescription for asthma/allergies that has lessened the cough. Initial chest Xray is clear, should I push for a CT? I am a 29 y/o male, nonsmoker. How can I convince the doctor to prescribe the CT?

Stephen, it is difficult call as the odds of you having lung cancer are small. Then again, it does happen, even at your age. My own cough began as small and nagging but persistent (as was the noticeable shortness of breath). I was even told I had ‘cough variant’ adult onset asthma. This went on for more than two years before as the symptoms worsened and I developed pneumonia. I say, follow your gut instinct. Don’t let paranoia take hold (easy to do) but rather listen to your body and if you feel certain that a CT scan is in order, than find a doctor who will take your concerns seriously.

My mother is experiencing all of these symptoms however she can not digest food. She just left the emergency today. They keep saying she MIGHT have an infection,gave her anti biotics but that’s not it. Shortness of breath,lungs are sore,can’t breath when sitting so she stands up all day. Non stop coughing. Never sleeps. She will go months of feeling pretty alright but needing her inhaler from time to time. Then BAM a nasty flare up that’s worst than the last. Its been this way since 2014. 6 AaDrs in 2 states,all scans show up clear but her breathing is worse,she cannot digest food and she’s on steroids. But her CT scans and X ray always come back clear. No one knows what’s wrong but something is wrong and in so afraid I’m losing my mother and no one will no why! .we need help.

Jessica, I am so sorry it took me so long to respond–I sincerely hope the situation with your mother has changed and that she is feeling better or that you have a clearer understanding as to why she has these symptoms.

I am a 28 year old female who has had pneumonia 3 times in 1 year (sept 2015, may 2016, sept 2016) all in different parts of both lungs. I was placed on oxygen 24/7 from sept 2015 until October 2016 with shortness of breath and pulse ox levels of 65 to 80 without it. I received a call December 22nd from the local cancer center questioning me why I have not been getting my treatment. I was unaware that a mass was found in my right upper lung in Sept 2016. I am scared and do not know what to think. My pulmonologist would like to keep monitoring the mass of 4 mm. I think mainly due to my age and me being a non smoker. I am freaked out and do not know what to think anymore.

My husband just died of lung cancer after many missed iagnoses. He was a healthy man last year or so it appeared. He developed back pain in January of 2016. Through September he was treated for muscle strain which worsened each month. Then orthopedic doctor said shoulder causing the pain. He underwent a shoulder replacement September 8, 2016. By late September his pain worsened. I took him to ER and they discovered a fractured vertebrae which led to more testing. He was a non smoker all his life and diagnosis was non small cell lung cancer with rib and spinal metastasis. Started chemo then switched to immunotherapy. Appeared to be helping some except for continued pain in mid back. In April 2017 I took him back to ER and they found tumor had compressed his spinal cord and he was paralyzed the next day. He underwent a laminectomy which only made it all more miserable. He died on May 30, 2017. He could easily have been diagnosed early before stage 4. It baffles me that modern doctors ignore signs of serious illness in non smoker.

Thank you for the post. As a student RN (and aspiring Nurse Practicioner once I begin and finish my masters), I am very interested and lucky to be educated in this field. My symptoms started about a year ago and some were similar to yours, including the horrible hacking cough, lungs filling with fluid that needed to be expelled multiples times daily, muscle weakness(especially one my right side), huge weight loss and eventually coughing up blood as well. I have been admitted into the ER three times in the past few months and have had two clear chest x rays as well, except the most recent showed hyper expansion of the lungs. I had an abnormal ECG and heart attack and failure symptoms and have been suffering from a burning crushing deep pain in my center chest that radiates through my back. I have tumor like lumps that were on my chest and once they hit my lymph nodes they spread all over the body. I have constant migraines, loss of vision, and memory black outs. My mental health and hearing are both degrading as quickly as my physical health. My veins pop out at night and I occaisionally get deep vein pain, the ER doc predicted a deep vein thrombosis. After examing my own stool culture, I noticed mucus like strings. Weight loss is getting worse and all of my symptoms are getting exponentially worse, but I finally was able to self diagnose: ascariasis. The lung and heart problems (as well as the cysts and everything else) has been caused by a parasite, the roundworm ascaris. I am afraid it is too late as damage has spread to my liver and kidneys and I cannot breathe often. I sound like a wild beast while breathing, the growls that happen are crazy. I have collapsed and lost conciousness twice now. I am on the way to the doctors right now currently.

Thanks Hope—I am actually doing well, despite everything (or sometimes I think, because of everything 😉 I have been on the same experimental therapy for over three years now and my cancer is stable. And I enjoy every moment.

Hi Linnea,
I reached out to you on Inspire, but it looks like I may have a better chance reaching out to you here. I have been experiencing symptoms for the past 3 months that point to lung cancer (unintentional weight loss, blood in sputum on ocassion, black stuff in sputum daily, left side chest discomfort, left shoulder blade pain, constant phlegm in back of throat and hoarseness). X-ray was clear and chest CT only showed five 2-3 mm nodules and mucin plugs (unless something was missed).

For your symptoms:
1. How long did you have hemoptysis? Did you have it daily?
2. Was your hoarseness from excessive mucus in your throat?
3. Was your hoarseness 24/7 or just a few minutes throughout the day?
3. Did your SOB ever get better after onset or did it stay the same? (I know it got worse 2 years later)